The disease, which leaves muscles so weak that breathing, feeding and other functions become impossible unassisted, is so rare that there are only 11 recorded cases in the world, and none in New Zealand history.

Milla’s prognosis is not known, given the rarity of the genetic disorder, leaving her parents, Kim and Maurice Karaitiana, with little consolation. It’s taken since Milla’s birth in October last year to find an answer, with tests eventually sent to Australia.

Mom Kim said on Stuff: “It gets to the point where you don’t focus on what she’s got, you break it down day by day and hope she pulls through. She’s a little battler.”

Dad Maurice does hope he’ll be able to take Milla home one day, to spend time with big sister Lydia, who is not yet three. Doctors say Lydia is unlikely to have the same problems, as it almost always shows up at birth.

Maurice said: “I want Milla to be running around with her sister, dancing to the Wiggles and swimming together in the sea.

“But as another mother in NICU who had been there several months told me, ‘All we have is the now’. I found comfort in that.”

If you want to contribute to Milla’s fundraising efforts, go to her Facebook page, called Making a Future Possible For Milla.